Bringing type 1 diabetes research to underserved communities

Birmingham Community Healthcare NHS Trust (BCHC) run a programme run called Community Connexions, which brings research and healthcare services to communities in the area. The group listens to the needs of local underserved groups to understand health inequalities and adapt services to help remove barriers to access. Over the last two years, Community Connexions has worked with the ELSA study to bring the type 1 diabetes screening study to a diverse range of people in the Birmingham area.

Building relationships with community groups

Urfan Siddiqi said: “My role as BCHC Community Connexions Lead is to build a network of community organisations with underserved communities to work collectively to tackle health inequalities, enhance quality of life, and help improve health outcomes. People in underserved communities feel they do not have a voice, their concerns are not listened to, they feel marginalised and have no trust in the NHS. To make a difference, I take time to listen to the communities, building trust, relationships and understanding of various cultures and the barriers they face. Importantly it is about sustaining engagement and not walking away from the communities after the engagement activities.”

Raising awareness of type 1 diabetes

Community Connexions held a series of listening events and focus groups with attendees including Syrian refugees and people from Pakistani, Bangladeshi, Romanian, Afghani, Somali South Asian and other African and Caribbean communities and White British families with children who have special needs. At these sessions, the team collected feedback regarding the barriers they face to accessing health and healthcare services. The team also shared information about type 1 diabetes to give the local public a better understanding of the condition. The audience liked these focus groups as they enabled two-way communication, empowering people to feel they were bringing about change.

Promoting the ELSA study

The ELSA study was promoted at these events with the Community Connexions team translating the study’s information sheets and simplifying the information into a one-page summary. They invited language translators to facilitate discussions with the community members. Dr Lauren Quinn, a Clinical Research Fellow in the ELSA study, joined the focus groups to give the community opportunities to ask questions and ensure they were comfortable with the process.

Dr Lauren Quinn, Kiera Sanghera (a clinical research nurse) and Dr Fatima Zakia at one of the Community Connexions listening events.

Community screening clinics

So far, Community Connexions has held six ELSA study clinics with more planned to follow. At these clinics, research nurses screen children for type 1 diabetes in the community centres that different community groups already use for their own events. The team has found that avoiding clinical settings makes research feel less intimidating and improves trust in the research project.

Somali community clinic

The first community screening clinic took place at Ileys Community Association. The ELSA study team screened 25 families from the Somali community and found one child had biological markers of type 1. The child’s parent does not speak English, so the ELSA study used a telephone interpretation service to share the results with her and invite them to further testing at Birmingham Children’s Hospital.

Other clinics

Details of the other five clinics are as follows:

• Children in 28 families from mixed communities were screened for type 1 diabetes and given health checks at the Nishkam Centre
• Six children from Syrian refugee families were screened for type 1 in the first clinic at Refugee Alliance
• 31 children of South Asian background were screened at Aspire & Succeed
• At OSCAR Birmingham, 14 children from Black Caribbean and African communities affected by the blood conditions thalassemia & sickle cell anaemia were tested for type 1
• 30 children of Afghani, Syrian and Kurdish refugees were screened in the second clinic at Refugee Alliance

Implementing changes

The feedback from the focus groups was that the forms required to sign-up for the ELSA Study are too long and difficult for people who aren’t fluent in English. Unfortunately, due to ethics restrictions, the ELSA study team can’t make changes to the current study design.

The ELSA team will work with Community Connexions to get people involved at the design stage to ensure more cultural understanding from the start. This will include developing study methods that are tailored to be inclusive. In future screening projects, the team will use simpler language and create shorter forms, being sure not to repeat questions.

Sharing learnings with other researchers

Dr Fatima Zakia is now working with Dr Lauren Quinn on several scientific papers on how they collaborated with community groups to improve the representation of ethnic minorities in the ELSA Study. Once these are published in scientific journals, other researchers from different fields can use the learnings to design their studies to be more accessible. This work is crucial to address health inequalities.